kimballot

Yes.. we are an H1N1 exacerbation story. My PANDAS son and non-PANDAS daughter both had presumed H1N1 last fall, as did half or more of their respective schools. I do not think the PANDAS kids got it any more than non-PANDAS, I just think that we talk about it more because it was not one week of high fever for us .... For my son it turned into months of school problems, separation anxiety and eventually a sinus infection (I do believe the inflammation that was started with H1N1 set him up for the most recent infection that we are dealing with). Symptoms did not get better until prednisone, although that has its own set of issues (tonight he has restless legs). It is funny because I was just reading the posts on pepsi refresh project PANDAS about not vaccinating. I am glad we did not vaccinate against H1N1.. but on the other hand... getting the actual virus has certainly sent him into a tailspin. I wonder if the vaccine would have been better or worse?

Buster - thanks for the clarification. The margin drift is very interesting... and I always appreciate your detailed observations. Very helpful. Thanks

Peglem and buster - thanks for the post - Buster - I was not clear what you meant by "margins" - are you talking about the margins on her papers when she writes? Also - could you explain a bit more about week 27 until now? Are you saying that she started backsliding in week 27 and she is now at pre-IVIG levels? Also, how many weeks post IVIG are you now? I don't mean to interrogate - I am trying to get a picture of this. Thanks so much!

Thank you so much for posting this. I learned a great deal. I've never heard of a sunlight tic - but it sounds scary as a parent. Have you talked to an opthalmologist about this? I am curious as to how dangerous it actually is (I really do not know). I know lots of kids with developmental disabiities or visual limitations tend to be drawn to the sun, so I can imagine that it is pretty powerful source of stimulation. I wonder if there is a safer way for your son to fulfill that need if it is really bad for his eyes. Hopefully you will get some answers soon with the cunningham test and get some direction with treatment. Please keep us posted.

My son has been experiencing an exacerbation of symptoms that started in November with H1N1. In mid March he was diagnosed with a sinus infection and was on biaxin. That seemed to help a bit, but once the biaxin ended, he had uncontrollable neck tics - to the point of pain. During the entire time- from November until April- his executive functions were shot. He has been unable to do even simple math. I am sure the 7th grade teachers are wondering why he is even in the classroom he is in. He could not remember anything the teachers said and I spent hours everyday after school trying to wedge the material he was supposed to have learned in school into his brain. His daily assignment book was an absolute disaster and was so difficult to read that the teachers had to write over his writing and we even have him checking in with the assistant principal every day after school for a back pack check so that he brings home the work he needs and has all of his assignments written down in a way that I can understand when he gets home. He was miserable and so was I. He called himself a "freak" - and called me worse. On April 6 we thought he might have strep throat - his sister did - but no- my son was negative (again). On April 8 he hit an all time low with opposition and name calling and swearing at me... and I was seriously dejected. The next day he had an ENT appointment and our wonderful ENT PA said his sinus infection was still raging and she asked if it would be OK to put him on ominicef and prednisone. I happily agreed. We started the meds on Saturday April 10 , and on Tuesday night the fog cleared and he sat and did his homework without fighting or prompting. He did well the rest of the week. Last week we saw Dr. B and he started him back on 17 more days of prednisone and on augmentin. Today, my son came home from school and I asked to see his assignment book. There - neatly written - in small, evenly spaced letters were his assignments for the week. Not perfect writing... not the writing of a 7th grader... but legible. I can read every letter. There is nothing that the teachers wrote over. I am so happy but am also feeling worried about the rug being pulled out from under us again. But for tonight I will go to bed and think about those letters.

Hi Fiveam - BTW- I love your username! Wish I would have thought of that one! It sounds like you are very concerned about the long term treatment for your child and not wanting to put your child through unnecessary treatments. I am SO with you on that one! How do we know what is right for our children and what the best course is. If we had known about PANDAS 50 years ago we would have some scientific studies of efficacy. We would know what percentage of children do well with augmentin vs. azith vs. no antibiotics. We would have patterns of children that would make up subgroups of PANDAS and we could give names to those subgroups and know the best ways to treat each subgroup. That the kind of evidence-based practice that families facing other disorders work with. Unfortunately, I've come to accept that we do not have that luxury. We are creating the evidence. As I've followed people on this forum I've come to recognize some of the patterns, but I am far from an expert on PANDAS (other than my own son's). The PANDAS experts (Dr.L, Dr.B, Dr.K, Dr. T, etc) do seem to recognize the patterns, and Buster has posted a flowchart of how diagnosis and treatment are often made. My son's PANDAS is very different from your child's. We do not deal with food refusal - in fact we deal with compulsive eating (which I never see others talking about). But I have worked with children with sensory issues with anorexia and it is very scary for the parents, so I can only imagine the fear and weight you must be feeling. I can tell you that when my son was younger he lived on antibiotics and it was not something that we planned because we did not know he had PANDAS at that time. At the time we did not know that he was harboring bacteria in his tonsils (because he never had a positive strep test)- once we figured that out we had them removed at age 7. Now he has only 4 courses of high dose antibiotics and no prophylaxis in the last 6 years and has done fairly well (until H1N1 this year!). I am telling you this because when my son was 6 1/2 he was at his lowest point ever. I was on the internet every night at 5 am searching for answers. I could not imagine that he would ever come off antibiotics or that he would ever have a meaningful life. He did not want to live. He tried to run into the street at school in hopes of being hit by a car. I was afraid to leave the house when he was home because I did not think my husband or anyone else would watch him closely enough. I thought we would have to start him on strong psychotropic medications just to keep him from hurting himself. A friend of mine who had 5 children - all with special needs - told me to take a deep breath and just think about today. What did I need to do to help him today. She said that if she thought about the future for each of her kids, she would become depressed and anxious and be of no help to anyone. I must admit that I am not perfect at doing this - and I am still often googling at all hours of the night - but I try to focus on today and what I need to deal with today. Today my son is really a pretty typical, happy, funny kid most of the time and really is not on antibiotics all the time. We have some new problems since H1N1, but we are dealing with those, and he has some new immunodeficiencies so we are starting to think about IVIG. He has friends and likes to skateboard and is a great kid, with some problems that pop up from time to time. Today you need to deal with your son's anorexia and today you are preparing for an appointment with a PANDAS expert. That is a good thing. I hope you will post and let us know how it goes. I wish you all the best -

Gracias I knew I had it somewhere and I need that for tomorow!

Vickie- I don't want to hijack this thread, but could you tell us where that Swedo Quote was from? I need it! (We have never had high strep titers or a positive throat culture)

Do behaviors precede the infection? They did for us. When my son was younger he always started with bedwetting, then it went to hyperactivity and biting (which we later determined was due to compulsions), then night terrors, then gagging on breakfast... then stuffy nose. Rarely a fever. It always turned out to be sinusitis. After the first few rounds of this I started calling the ENT when the bed wetting and biting began. On ENT exam his sinuses looked fine, but then a few days later - bam - stuffiness and sinus infection. One time when I called with bedwetting and biting the ENT met us at the hospital and we did a sinus CT scan and, sure enough... sinus infection. After that they started moving him from prophylaxis to high dose Augmentin when his behaviors became unmanageble. We did not know it at the time, but we were treating his PANDAS by trial and error. Now that he is 13 I am seeing the physical illness first. Perhaps because he is better at managing the PANDAS symptoms (and hiding them) himself.

I agree with Vickie and Peglem - all kids respond differently to allergy meds. Try to find meds that are dye free, of course, and liquid is better at a young age because you can adjust the dose more easily. It is very important to keep an objective log of behaviors when you change any meds., so you can go back and look for trends over time.

Hi Melanie - I also wonder about antivirals. I am not sure exactly what your situation is. Does your child TAKE antivirals and you are wondering if the antivirals are a problem, or does your child NOT take antivirals and you are wondering if it would be better to take them. I can tell you that my son does have PANDAS exacerbations after viruses, and we have never done antivirals, but he was just recently diagnosed with PANDAS, though he has had it for many years. I am also wondering if I should be seeking more aggressive care when he has a virus. I do not want to make things worse in the long run. I will be interested to see what others have experienced with this. Thanks for the Post!

Mike - You are fortunate to have found this forum and this group of dedicated parents.Your son is fortunate to have you here. I am relatively new to the forum myself, but spending time her really helps me make sense of all my family has been through for many years. My son is 13 and we are just now getting a real diagnosis. I am looking forward to a future where we can be pro active about his condition, promote research and understanding about the condition, and be well informed of all advances as they emerge. Spend time here. Read the studies and Buster's summaries of the studies. Read people's stories and find the stories that seem to fit what your son is going through. Save the stories that fit and put together a blueprint for your family to follow. All the best to you and your family... and Welcome.

Hi - I found this March, 2010 ENT newsletter that talks briefly about PANDAS. Those of you working with ENTs may want to share it - http://www.enttoday.org/details/article/58...ttitis_sin.html

Wow! Your persistence paid off! Congratulations - I am smiling!

I can only tell you what we did when my son was 6 and having lots of behavior problems. We had the most success with social workers -especially the school social worker. She really made a huge difference in my son's life. She had some one-on-one time with him when things were really bad and he tried to hurt himself, and I know she would play games with him while she talked him through it... but she also had him in lots of socialization programs that really helped, like "special friends" and "lunch bunch". That regular, subtle intervention really helped him to develop some good coping skills that he still uses today. We have also done CBT with a psychologist, but my son was 11 when we started that and even at that age he was a bit young to get the most out of it.

Hi Saidie - I was in a similar situation a few months ago. As frustrating as it is, your neurologist may be doing you a favor in the long run. Having someone who does not fully understand PANDAS interpret the results may be worse than not having the blood work done at all as it could lead you in a false direction or result in the insurance company not covering what you really need. You need to see a doctor that specializes in PANDAS or is very willing to learn from the experts. I do not know anything about Dr. R in Dallas. Has he/she seen kids with PANDAS and / or is he/she willing to learn? That would be my first question. Dr. B is excellent, but phone consults are difficult. Is there anyone on the PANDAS list that is pinned at the top of the forum who is within driving distance?

Thanks! Did not mean to be confusing!

The SI issues are exacerbated with PANDAS exacerbations. An OT can give you a good "sensory diet" (meaning specific sensory inputs - not foods to eat)... that can help during exacerbations. Some kids need ongoing OT intervention if they also have true SI dysfunction, but many PANDAS kids just need sensory management during an exacerbation. I agree with the other posters. The book "the out of sync child" by Kranowitz is also a good resource.

Hi Melanie - I think Dr. B prefers office visits to phone consults. I would just call the receptionist and make an appointment to go and see him. Check to see if he takes your insurance, and then plan accordingly if you have to pay out of pocket. He does give you 110% of his attention while you are there and you leave with a plan and with a follow up appointment, so you do not feel that you are alone when you leave there. Melanie

I want to thank everyone who helped me over the past few months with managing my son's PANDAS. As many of you have heard, my 13 year old son has had a life-long history of allergies, severe chronic sinusitis, and behavior problems with sinus flare ups. By the time he was 2 years old we called the ENT every time he became hyperactive or started biting kids and the ENT responded with high dose augmentin, which calmed him down. Unfortunately, this did not cure the problem and along the way we had several "exorcist" episodes, OCD issues, tics, and down right depression from having to live like this (I was referring to his depression - though my husband, daughter, and I've had our moments as well in dealing with this as well!). From 1997 until January 2010 we worked with one pediatrician, 3 allergists, 4 ENT docs, two ENT PAs, one immunologist, one neuropsychologist, one neurologist, one clinical psychologist, one gastroenterologist/allergist, one clinical social worker for play therapy, one summer program for ADHD, one family therapist, one psychiatrist, several OTs (at home) plus the full compliment of school-based special eduction, OT, social work, psychologist, and regular assistance from the principal and assistant principal an school nurse. Mind you - I really do not doctor shop. My daughter has had one pediatrician, one ENT and an allergist in her 15 years of life. In January of this year I found out that my son was lost at school - not turning in work (that I knew he had done), unable to attend, forgetting everything (again). I tracked his grades and saw that he went from grades in the 80s from Sept - October to grades in the 50s in November-December. He was home the first week of November with the flu (presumable H1N1). I knew this was PANDAS, but have been told multiple times by local docs that it could not be PANDAS because he has chronic sinusitis and has never had strep throat. I took him back to the local docs who now thought I was even crazier because now I was thinking the flu caused PANDAS. Thankfully, I found this forum. I found Dr. T, who helped me to organize all the medical records and did an initial phone consult to tell me that I was not crazy and it did look like PANDAS. Then I posted online because my son's blood work showed some mild immunodeficiencies and he was having another sinus infection. Momaine, Mama2alex, melanie, Shaesmom, and nevergiveup all wrote back and encouraged me to go directly to a PANDAS immunologist and get a Cunningham test. Well - we just got back from Connecticut and Dr. B saw my son and agreed fully that my son has PANDAS and immunodeficiency, along with a sinus infection (ENT had dx that last week as well). We have a solid plan to deal with all of this with Dr. B and I am so grateful to be able to put all of this into the hands of someone who sees the whole picture! We will do lots of tests at home and go back in a month for follow up. On the way home from CT we stopped and checked email - and my son's CamK was in - 156 - right in the middle of the PANDAS range (a big thank you to Kathy Alvarez and Dr. Cunningham!). So that is my PANDAS story - Thank you to Sheila and to everyone who posts on this forum. I have learned more in the past 3 months from this forum than from any class I've ever taken! Thank you - and I pray for all of our families to continue to learn from each other and heal.

Thank you for posting. We see Dr. B tomorrow. My son is similar in many ways. Thank you. Thank you!

interesting - WE've checked for that in the past but being that the eosiniphils are in his intestines.... perhaps we should look again... Thanks

My son does not have eosinophilic esophogitis, but he does have eosinophils in his intestines (found with endoscopy), where they should not be. The GI/Allergist that we worked with explained that he was likely reacting to food. She tested him with skin prick for every food and all was negative. We also did provocation/neutralization testing, (from a different doctor) which does not have strong evidence, but seems to be more sensitive for some kids, and he reacted to every food he was tested for, and we treat him using extract therapy (we use shots, but this is similar to the sublingual drops some use). Again - no articles or evidence to show you in the US - but it is rather well accepted in Europe from what I can tell. We also got a rx. from the GI for cromolyn - which is something that is usually put in nebulizers for kids who have asthma. My son used to drink it with every meal. They stopped making cromolyn, but now make gastrocrom, and he has used that for his food allergies. He now only uses that when needed, but used to take it at every meal. Regarding PANDAS - my son we find that keeping the allergy load low helps to decrease exacerbations. My son is now clearly in the PITAND range, and allergies are one trigger.

Oops - I was typing too fast without looking - I meant to say IgG - I will go back and edit. Thanks!

We saw marked improvement on the evening of day 4.